May is Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month, a time dedicated to increasing understanding and awareness of a group of complex, often misunderstood connective tissue disorders. These medical conditions affect the body’s connective tissue, which holds your skin, joints and other organs together. People with EDS or HSD may look healthy on the outside, but they often deal with pain, injuries and fatigue every day.
What is Ehlers-Danlos Syndrome (EDS)?
EDS is a group of genetic disorders that affect how the body makes connective tissue. Connective tissue is found throughout the body, providing support, protection and structure to other body parts. The Ehlers-Danlos syndromes are caused by genetic changes that prevent connective tissue from functioning correctly. There are 13 different types of EDS, but the most common is hypermobile EDS (hEDS).
Each type of EDS has its own set of features and distinct diagnostic criteria. Some symptoms are common across all types of EDS.
Common symptoms include:
- Very flexible joints (also called hypermobility)
- Frequent joint dislocations and sprains
- Chronic pain and tiredness
- Fragile or stretchy skin
What Are Hypermobility Spectrum Disorders (HSD)?
HSD is similar to hypermobile EDS (hEDS). It also causes joint pain and hypermobility, but it doesn’t meet all the medical rules for EDS. People with HSD often have the same symptoms and struggles as those with EDS. Joint hypermobility is seen in all types of HSD.
Joint hypermobility alone is not always a problem. The problem occurs when hypermobile joints are unstable or place too much strain on other parts of the body. Joint instability occurs when a joint’s bones aren’t held securely, leading to joint subluxations, dislocations, sprains and other injuries. Hypermobility also affects a person’s muscles because the muscles are required to “hold on” to the joints, which puts extra strain on them and causes muscle fatigue more quickly.
How are EDS and HSD managed?
There are no disease-specific treatments for any type of EDS or HSD, so they are managed by addressing each person’s symptoms. There are lifestyle modifications that can be made that will help, such as pacing your activity. Each person’s care plan should address their individual needs. There are many conditions associated with hEDS and HDS. These comorbidities can include autonomic dysfunction, digestive issues, chronic pain, mental health conditions and many more.
Why Awareness is Important
Many people with EDS or HSD wait years for a correct diagnosis. Their symptoms are often overlooked or misdiagnosed as anxiety, poor posture or growing pains. Without proper care and understanding, these conditions can get worse and impact both physical and mental health.
Resources to Learn More About EDS & HSD
- The Ehlers-Danlos Society – What is EDS?
- The Ehlers-Danlos Society – What is HSD?
- Video: Ehlers-Danlos Syndromes (EDS) Explained: What You Need to Know
